Bruce: The Smelly Helper – Why He’s an Emotional Support Animal

Bruce is pretty calm. We got him as a pound rescue a couple of years ago. He was 9 or 10 at the time, and a full bred miniature schnauzer! The only problem with him was that the pound workers knew him by name, and had known his previous 2 owners. You see, Bruce is a runner. He will dart away at any given chance. He likes to explore. He likes to take long walks on the beach… or, I imagine he would if we lived near a beach. The previous owners gave up on coming to the pound to get him. Each, in turn, decided he wasn’t worth it.

That’s sad, but that means that we got him, and that’s happy.

Being an older dog, Bruce mostly just lays around, he’ll come and put his front paws on someone’s lap if he’s hungry or need’s to go outside. He jumps and howls like a hound dog when he’s excited, but mostly, he sleeps… that is, until he senses something is wrong.

Dog’s have an uncanny ability to detect when something is wrong or even different. Our previous Miniature Schnauzer followed Julie everywhere during her pregnancies. It was at about month 7 that she realized the reason he wouldn’t even let her go to the bathroom alone was because he was protecting her. He could smell that she was pregnant, (or at least that something was different) and he was making sure she was safe.

Bruce can tell when one of two things is happening. I imagine that he knows the difference, but his response is this:

You won’t be able to tell from the picture, but he’s jumped up on my lap, climbed onto my chest (bypassing the computer that is usually on my lap)  and stuck his nose right into my business. I imagine him saying something along these lines: “You’re not okay, but I am here for you.”

Bruce can tell when I’m having panic attacks (all too frequent since the anxiety started a couple of years ago), and he can also tell when my hands and arms are seizing up from the fibro-pain.  The thing is, I can’t always tell when one of those two things is happening (at least not until it’s WELL into the process). Julie laughs a bit at my ignorance (in good humor). I always hurt, I’m always in pain, and I can’t always tell what hurts, or what’s in pain, because it’s always there. Bruce knows, however. And then he stays on my lap and holds me. He just will snuggle onto my lap and let me pet him. (When it’s hot, he’s determined to pant in my face, just to ensure that I know how much he loves me). I don’t understand how it works, but petting him helps keep the panic attacks from really taking over. Petting him will usually keep my hands from completely locking up in pain, though I have noticed no significant reduction in the pain.

Because he’s so helpful, I’m often question why I don’t certify him as a service animal, so that I can take him anywhere. The answer is a bit varied and complex, but I’ll give the basics if I can. Service animals, as defined by the ADA, are DOGS that perform work or tasks for a disabled person. Because service animals are considered a medical device, they are allowed, by law, into any public area (with a few, nuanced exceptions). However, the owner is still responsible for the dog’s behavior, and therefore the dog must ALSO (along with performing work or tasks) be well behaved.

While Bruce “alerts” to my attacks and mini-flares, he’s not actually performing any work or task, he’s just being a dog. A good dog? Yes. A smart dog? Yes. But a medical device? No. Further, Bruce, as proved by his history in the clink, doesn’t have good citizenship. He like’s to jump on people. He likes to bark when he’s excited. He likes to run, and pull, and tug on his leash. He, therefore, falls into a second category of medical animal: an Emotional Support Animal, or ESA. Because he does help me medically, (primarily emotionally, though the fibromyalgia mini-flares are, by the majority of accounts, not emotional, but physiological), he does gain some rights under the ADA, primarily, an apartment complex that doesn’t normally allow pets cannot turn him away. Other animals besides dogs can qualify as ESA’s, though most common besides dogs are cats. Some people use pigs, miniature horses or any other pet. It is this category that is most often abuses by people who just want to keep their pet.

While I almost always take Bruce with me when I leave the house, because he isn’t a Service Animal, I cannot demand his acceptance into any building. I’m at the mercy of the store or shop or place as to whether or not I can bring him in.

If you didn’t know that before: NOW YOU KNOW. If you happen to find Bruce wandering your neighborhood: please call me, I’m probably looking for him.

Night Terrors, Fever Dreams, Waking Dreams, and 8 Legged Things:

It is chasing me. No matter how fast I run, the beast is just on my heals. It starts in my childhood neighborhood. It’s in the neighbor’s back yard. It almost has me. It will consume me when it gets me. Not eat me, no: that’s not enough. It intends to devour my soul. I try to catch glimpses of it, but it is hard to look back while I’m running. I can see a hairy leg here, or a massive pincer there, but mostly I can see the shadow. This is shadow unlike any caused by a lack of light: it defines the lack of light, it destroys light. It is true darkness. I can feel the evil emanating from that darkness, and it wants me. The faster I try to run, the slower my legs move, and it is going to get me. In my heart, I can feel the eight legs moving, but the beast makes no sounds as it moves at the speed of the wind. It’s almost here! I fall! It has me! I’ve been awake for minutes, but the paralysis still holds my arms and legs! I can’t breath! No, I can breath… Can I move? What will happen to me?

We have a rule, unspoken, I think, that the person who has to work the next day doesn’t stay up with the kids who don’t sleep. Normally, that rule has worked in my favor (though not always)… tonight, however, it falls on Julie to sleep, and me to get tortuously woken up every time I’m on the verge of sleep.

Ezra had a few night terrors as a younger child, he still gets nightmares. We didn’t know what was going on, at first. I think they were as scary to us as they were to him. We’ve grown accustomed to them (fortunately they aren’t all too common), but they are no less disturbing. Once we had a name for them, it helped to explain what I experience.

Nathaniel’s are different. His, more like mine, are waking dreams as much as night terrors. He’s had his eyes open and is aware of what is going on for the last several hours, but there is more happening for him than for me. “Daddy the spiders are behind you!” He screamed as he dives into my arms. His fever makes him uncomfortable to sooth on a night this warm. “Daddy, their trying to eat me!”

It seems, as he’s described it, that his terrors involve spiders as well – (though he did mention a particularly terrifying octopus as well) – it is the spiders both big and small that are surrounding him and trying to get him.

Unlike the defenselessness involved in my dreams, the poor boy is exhausted for another reason: He’s been forcefully pointing his arms and making shooting noises all night. At first I thought he was playing, but, while his eyes are open, he is clearly asleep. He’s terrified, but he’s fighting the monsters of his dreams. And every once in a while he gets one (“I killed it!”).

I hope that his waking fever dream doesn’t create in him the phobia of all things arachnid that they have for me, but I take some hope in knowing that, no matter what, my son won’t go down without a fight!

Summary and What’s Going on Now

Okay, so the last couple posts have taken some downer turns…

Here’s a summary of what I’m dealing with in terms of my health:

I hurt, constantly. My back reduced my mobility to nothing. My fibromyalgia causes pain in everything else. The RLS makes it so I am a chronic insomniac, and the generalized anxiety makes it so I cannot function well in public even when I am well enough to go out. My stomach problems are… significant and frequent. I won’t publish the details publicly because… well, people don’t want to know that.

Overall, my ability to function have reduced to the point that we’re not sure if I’ll be able to work again. Julie is working now in support of our family. I’m looking for work, and have some good prospects, but the accommodations that are needed are so significant that I doubt they will fall into the category of “reasonable”

This has led to some major life changes. With my lost job from Panda, we’ve lost our house (or, the foreclosure is complete in 11 days) we’re now living in a water-closet sized apartment in Utah, which is actually quite nice, for a water-closet.

During the process of moving, the mortgage company broke into our house, changed locks, and either directly or indirectly, stole about $15000 worth of our stuff, including all of my tools, my camping gear, my archery gear, my climbing gear and a good chunk of my reloading gear (as well as my toilet paper and dutch ovens, which I’m not sure which of those I’m more upset about. You just don’t take another man’s cast iron, people!)

I’m in the process of applying for disability, which I am not proud to admit. I will almost definitely get turned down, as something in the realm of %95 of first-time applicants get turned down. Then begins the arduous and many-year process of appealing that decision. I’ll probably get my rejection letter some time this week.

Julie was asked to interview for a management position within a couple of weeks of beginning her new job, and she was given that position. She’ll do very well, but it’s pay is not quite enough to live on (yet).

My last Dr. appointment, the doctor was concerned about my heart health because, since 2012, I’ve gained somewhere in the ballpark of 40 lbs. Sedentary lifestyle doesn’t suit me well. After that appointment, we went and got a recumbent trike. I’m not longer able to ride a regular bicycle, and I can’t balance enough to ride anything with 2 wheels. I find great joy in that, when I’m well enough to ride (which isn’t often enough, to be honest: only about 1 or 2 times per week, and then finding the time when i’m feeling well makes it… hard)

I’m working on losing weight with diet alone, which is proving difficult, because I’d rather be fat than hungry… and that preference is going to kill me.

So here goes the struggle of the 30’s – maintaining one’s youth without getting fat, ornery, and jaded. So far I’ve failed, but that was the point of the previous post.

I’m moving on from the stuff with Panda. Without others, I cannot do anything else, so I’ll leave the remaining justice to God. I’m trying to move past my brokenness and the things I cannot do, and focus on the things I can.

I’m not looking for sympathy. Generally it doesn’t help anyway. I’m still me. I’m just a more angry me (I’m working on that, too). I’m still the same guy you used to know (if you used to know me), I just can’t do the same things I used to… and I’m learning the new things that I can do.

Of late, I am realizing I don’t like the person I’ve become. I’m not pleasant to be around, and that’s worked for me, because I have had so much anxiety about being around people, it’s easier if they just don’t want to be around me. I don’t like how I look. I don’t like that I have wasted so much time living in the past.

So now I’m moving on. That’s an intimidating challenge, but I’m up to it. I have hope for the future, which is saying something considering that I don’t see how we could fall much lower. I guess that’s where the hope comes from – there’s only one way to go – up. My uncle Jim posted on his Facebook a meme that said something along the lines of “people always get caught-up on whether the glass is half empty or half full: they forget that the glass is refillable.”

Naming Names and Anxiety

We’re getting nearer the end now.

I worked at Panda Express. I loved that job. I was good at that job. My boss retired, but before he did, he warned me that his replacement didn’t like me. He hinted that it was because of my skin color, but wouldn’t say it out loud. It was at Panda that I fell and hurt my back, but we may have waited to long to discover it, and we’re still waiting to see if i can get worker’s comp for that injury.

Because my new boss was pre-disposed to dislike me (starting about Feb 2012), and because I was hurting so bad, going to work started to make me anxious… a lot. The anxiety has gotten so bad that, long after my time with Panda is over, I still have panic attacks. I still find myself hyperventilating for no reason. I don’t struggle with Major Depressive Disorder but I absolutely struggle with major Generalized Anxiety Disorder. It’s crippling. I’m afraid to go into public and be seen falling, or hurting, or wincing or having a panic attack. I have real problems (medically, not morally) with the constant questions about my problems… and real problems (more morally than medically) with “My cousin’s boyfriend’s roommate’s ex-sister-in-law had that problem and she…. so you just need to do that)

Anxiety is a problem. It’s the reason I’ve failed so fully in letting those close to me know what is going on with me.

Panda eventually fired me in a case of (in my opinion) clear discrimination. My attorney though so too, but because a couple of people refused to testify (they still work there, so I understand) and stand for the truth, the lawsuit stands stagnant. I think i have 1 month left to move forward, and then it dies. That hurts, because truth needs to be out there. You won’t see me go to a Panda Express, Haibatchi San, or Panda Inn, not because they fired me, but because they covered up and ignored clear discrimination for months. Their Human Resource Department actively hid evidence that showed the discrimination, and failed to follow up on repeated claims of discrimination from others (not just me) – and nothing is going to happen to them because there are some people who do not have the courage to stand. I’m not saying that I don’t understand their cowardice. But to you of whom I am speaking: know this, your failure to stand means that this will happen again to someone else. I stood. I lost the best job I ever had because I stood. You sit and keep your heads down hoping that mine was an isolated incident. It was not.

Now, unless some of those who have previously reused to testify come forward now, this case is dead. I know. It sucks. It causes panic attacks to talk about it, so i really don’t want to. Yes, they discriminated against me. Yes that was morally and legally wrong. No, without testimony of those who remain silent, there isn’t enough evidence to move forward. The law is really not on the side of the victims of discrimination when the perpetrators are big businesses. I’m not sure the legal solution to that.

I won’t ask you to stop going to restaurants owned by Panda Restaurant Group, but I do want you to know why I don’t.

Falling and the Misdiagnosis… Kind Of

Around Christmas of 2011, I was hanging decorations in my restaurant. It was probably 2:30 in the morning, as we had just opened, and I was working long hours (9:30 AM to 2:30 AM Monday through Sunday for… 10 weeks? Yeah, I think 10 weeks before I got a full day off). I slipped off the ladder… and landed on the retaining wall in the restaurant on my back… and was promptly folded in half backwards. That felt nice. My pride was bruised, and so was my back. I went home, and let my employees finish up.

Starting in about February of 2012, I was hurting a lot. I went into the doctor. Looking at my symptoms, he diagnosed me with fibromyalgia. I don’t often name this when speaking to people, because of the common belief that fibromyalgia is psychosomatic, It is not. If you still believe that it is, go do some more research. After that research, if you are still convinced that it is psychosomatic, go stuff yourself. I don’t want to discuss it with you.

We based my treatments (insufficient at best) off of this diagnosis until really last year. But the problem was, this wasn’t the problem. It was a mis-diagnosis… kind of.

In the fall of 2013, I went to a rheumatologist to get an official diagnosis, as a GP’s diagnosis of fibromyalgia doesn’t generally hold much weight. He thought that I likely had Ankylosing spondylitis, which is nasty. Fortunately, I don’t have that. He neither confirmed nor denied my fibromyalgia diagnosis, because we needed to rule everything else out. He discovered spinal damage. He sent me to a neurosurgeon… Over the next year, we discovered that my lower back is… bad… I have 1 ruptured disc, which protrudes into my already small spinal column. Now, normally a ruptured disk can also be described as herniated. Mine is not herniated so much as… exploded… and it likes to push on my spinal cord. I have 3 compressed disks in my middle back.

So, If you see me with my cane, it’s because I can no longer walk more than a few feet without it. If you see me fall… that happens. It’s embarrassing. It hurts. There’s nothing to be done at this point. If you see me wince, it’s probably not something you said, it’s probably pain. I try to hide it. I try not to wine, but… I fail…

Most recently, we discovered that my upper back is fine! That’s great news, but it also confirms the diagnosis of fibromyalgia… which sucks…

So basically it goes like this: My back feels like I’ve been kicked by a large horse… twice… and it always feels like that. It doesn’t really feel better… ever… “get better” feels more like a slap than anything else, because I can’t. Surgery isn’t really an option, according to my neurosurgeon (well, it’s elective with a %50 chance of making it a little better and a %50 chance of making it a lot worse. I don’t like those odds).

If you see my hands twisted against my chest, that’s the fibromyalgia. That’s just my body’s reaction to nervous system pain in the arms and hands. If you see me weep a little, that happens too. I don’t like that. It’s embarrassing, and I try to hide inside during those times.

So, for me the back injury and fibromyalgia are tied together, not because of any level of cause and effect, but because they started about the same time, at least, they were discovered about the same time (looking back, I’ve probably had the fibromyalgia since about puberty, but at least since my crash in high school)

Broken Bones, Broken Promises, the Incompetencies of Arrogance, and a Miracle

When I was a teenager, I was stupid. Okay, I may still be stupid, I know, but I really was when I was a teenager. I was hunting in the fall of 2001. The morning hunt had ended, the dear had all bedded down. I was taking my 4 wheeler down the road back to camp, where, like everyone else, I’d have lunch and take a nap. The problem was that I was taking my 4 wheeler MUCH too fast. I lost control on a particular right bend. I hit a tree. The sudden stop threw me into another tree (a good thing, too, or else I’d have gone head-first into a rock… with no helmet). In the year’s past people have said that I got into a fight with a tree and lost. NO SIR! That second tree, about 8 inches in diameter, was chopped straight down by my right femur… which was also chopped in half. But I’m still here today. that tree is DEAD. I won that fight thankyouverymuch… well, as much of a win as can be expected with a broken femur… in the wilderness… by myself… with no one around… oh, crap.

I would love to say that I kept my cool. I’d love to say that I was calm… but that wouldn’t be true. I tried to get up, and I could feel my stump moving, but the leg didn’t. odd sensation. There really wasn’t any pain yet, just… bubbly? I’ve never really been able to describe that feeling, but bubbly is the closest I can come up with. I took out my radio (2 mile range, I think, on a straightaway. I couldn’t have been closer than 5 miles to camp through a winding valley) and calmly (oh, I’ve already fessed up to the truth?), okay, a little less than calmly screamed in to the radio “HEEELLLLPPPP!” a couple of times. I didn’t hurt yet, but I knew I was in trouble. You’re not supposed to have two knees, right?

I was fortunate… that word doesn’t really do it justice… there, in the middle of the wilderness, less than 100 yards away two hunters had stopped for lunch. At least that’s what they said. I’m still not convinced they weren’t angels. They were for me, at least. They literally saved my life. That broken stump inside my leg was millimeters away from severing my femoral artery… which doesn’t end well, though it ends quickly. They got my dad and MIKE WOOD from camp (fortunately our wall tent was easily recognizable with little description). As my dad, MIKE, and my two angels were trying to best figure out how to get me out of the wilderness, they began to look for a log, or board or SOMETHING to splint my leg. (ADD MOMENT: a splint, by definition, must immobilize both the joint above and the joint below a break in order to be truly effective. for a broken femur, start the splint at the armpit, and go all the way to the ankle). I decided then that I’d have a good attitude about the whole thing. When someones asked for a saw, I screamed at the top of my lungs “you’re not cutting off my leg!” I’m pretty sure my angels where worried that I’d hit my head. My dad already knew the extent of my brain damage and chuckled.

After they got me into the SUV, my dad and I endured 9 hours of washboard road. It might have only been 30 minutes, I’m not sure. It hurt. Bad. every bump (look up what a washboard looks like, there are a lot of bumps) was… how do you say? “ouch?” Once we got onto the main road, I realized that I wasn’t going to make it to the school dance that night. that made me sad. The first person that I talked to was my cousin Chris Shirts, who agreed to fill my place with Kaytie Gritton Miller at the dance. I vaguely remembering my dad calling the Mud Lake police. I vaguely remember him asking for a police escort through town, as he declared that he wasn’t slowing down for the 25 MPH speed zones (I think he was going 90?) I vaguely remember the dispatch telling him that they wouldn’t authorize him to break the law. I vaguely remember him saying something along the lines of “then stay out of my way, because I’m not pulling over!” I find it fortuitous that we didn’t see any police that day. Finally, after calling my mom, I remember my dad calling the hospital to explain the situation. I vaguely remember him telling them that I had a possible broken femur. I remember asking him why he said “possible” – he told me that, in his experience, medical personnel don’t like it when we small folk diagnose ourselves, and that it’s best to let them do the diagnosing. I also remember, perhaps with more embellishment than really happened, the WRATH of my father when the hospital greeted us with a wheelchair (“I CALLED AHEAD AND BROUGHT YOU A PERSON WITH A BROKEN FEMUR, AND YOU BROUGHT ME A WHEELCHAIR!?! GO GET A STRETCHER!)

ADD MOMENT: For those who didn’t know me at the time, I used to ride my bike… a lot…. like 20-40 miles a day, a lot… my legs were… big.

They should have been able to get me into surgery quickly, but traction took a while. A long while… my quads were too strong and kept pulling the traction machine out of place. I remember from my drugged daze, that the strap around my ankle to pull my leg straight was more painful than the break had been up to that point. The surgery should have taken a few hours. If I remember correctly, it took 8. My legs were too strong.

When the group of my friends (and my cousin) came to visit me before the dance, I had only been out of surgery for a few minutes and I wasn’t yet conscious, though I wasn’t quite unconscious either. I remember them coming in, but I don’t really remember who “them” was, nor do I remember anything else about the experience. The stories that spread around school over the next couple of days, however, embellished my stupor – I’d been in a hunting accident, and I wasn’t coherent… I’d been in a hunting accident, and I was in the hospital, in stable condition… I’d been in a hunting accident, and I’d been shot, which is why I wasn’t coherent, but I was in stable condition… the hunting accident, in which I’d been shot, had caused me to be in unstable condition: things are touch and go… I’d been killed in a hunting accident… the stories got gloriously out of hand, and quickly.

I spent the next 2 and half years getting multiple surgeries. My leg didn’t heal. it WOULDN’T heal. I approached my doctor in the late summer or early fall of 2003 to ask him if I’d be able to go on a mission – he told me that because my leg was still BROKEN (though an internal rod kept it in place) I would not be able to go, short a miracle. My dad gave me yet another blessing, by laying on of hands. He commanded my body to heal. By December, I was fully healed, and left on my mission just 3 months later. Miracles are real.

What does this have to do with the price of eggs? Well, not much, really. It’s a story that most of my friends and family know, at least in part. And when people see me with a cane now, they assume it is because of this experience. It’s not. The only lasting effects of my broken leg are this: a small limp and a $250000 barometer (when that weather changes, whoo! Do I feel it in my bones!)

Headaches and… Cancer?

As a young missionary, I began experiencing headaches. Not little uncomfortable things. Massive, severe… pain. Lots and lots of pain. I’d lock myself in a dark room and m3ake my companion have to sit in the apartment just waiting on me to feel well again. I went to the doctor, obviously. our conversation went something like this:
Doctor: “well, there are some possibilities.”
Me: “okay.”
“It could be stress headaches, but based on your description, I don’t think that’s it”
“It could be migraines, but I don’t think that quite fits the bill”
“it could be some muscles spasming in your neck, but I don’t see any signs of that”
“it could be a tumor…”
“Let’s check your blood pressure”
“wait, it… what?”
“your blood pressure is high, did you exercise before this appointment? Or are you nervous about something?
“you… nervous? why would I be?”
“i’m going to order a cat scan on your brain, but let’s reduce your sodium intake for that blood pressure, okay?”

Turns out, the doctor said that my “brain is perfectly normal.” Take that, deniers! I didn’t have a tumor, but the headaches continued. The problem with headaches, and all neurological disorders, to be honest, is that there are HUNDREDS of possible factors that can lead to the same symptoms, so diagnosis can take a long time, if it ever really happens at all. My headaches didn’t fit the bill for migraines because they were too frequent and too short. I wasn’t really able to monitor frequency at the time because all I could concentrate on was the pain.

I believe in the Bible. I believe James’ council (5:14), I had the elders lay their hands on me and offer me a blessing of healing. What I got was not that. I remember KYLE BROGDON acting as voice for that blessing. I remember his determination to command my body to be whole, to heal. I remember this because it’s what we both wanted. We both wanted to be able to work, to not be limited by my headaches. I remember his almost… awkward?… hesitation as he gave me these words instead: “you will not be healed of this affliction. You will have these pains the remainder of your life.” If you’ve never had the Lord confirm truth to you, it may be a difficult thing to understand, but at that moment, I had the truth of his promise confirmed to my soul. At the time, I believed it to be limited to the headaches. I’ve been shown since that it is not my place to put limitations on the Lord.

My headaches haven’t gotten better. I’ve been able to identify that they happen 4-8 times a day, and last 30-90 minutes, which better fits cluster headaches than migraines, but I’ve no official diagnosis there, either.

Getting to know the school nurse on a first name basis.

I hit puberty early. Uncomfortably early. Well, puberty isn’t really comfortable for anyone, is it? I hit puberty earlier than most girls, and long before the awkward videos in the fifth grade. I didn’t understand well what was happening to my body. I didn’t understand why those girls where SO good looking. But I also didn’t understand why I felt sick so often. You remember when you had a ‘tummy ache’ the teacher might send you to the nurses office for some pepto bismol or something like that? Well, MRS. PRICE didn’t do that. She’d put her hand on my forehead and tell me I was fine, and send me back to my seat. I’d sit in class feeling ill, not nauseous, but not well. My stomach hurt, and I didn’t know why. I had to use the bathroom more often than my peers, and that was embarrassing. It was hard to concentrate when my ‘tummy hurt.’ I think MRS. PRICE, like MRS. LORD, and MRS. CHRISTENSEN all believed I just wanted to get up and walk around. The latter two would at least send me to nurse, who I got to know on a first name basis: a couple times a week I’d lay down in the nurse’s office and feel miserable, but I’d never actually get sick, so I never could explain what was wrong.

In 7th grade, it got to the point that I decided something was wrong. I told my mom that something was wrong. I was, at this point, in the nurses office at the junior high almost every day. I think mom, like my teachers, just thought I was looking for reasons to get out of class (which was probably not entirely untrue, at least not completely). She humored me. She took me into the doctor who promptly diagnosed me with Irritable Bowel Syndrome. He didn’t really do any tests, nor did he give me a treatment plan, besides ‘don’t eat foods that make you sick.’ Thanks, doc. “Hey, it hurts when you do that, so don’t do it.” duh. Problem was, (and still is) that I don’t really have any foods that make me sick. Oh, Mexican food doesn’t love me as much as I love it, but that’s true of many of us, right?

As I got older, I began to just deal with the tummy aches and the other… problems… with the syndrome. Lately I’ve begun to question that initial diagnosis, something that every other doctor I’ve had (and I’ve had a lot) have failed to do. You see, IBS, while nasty, is the catch-all diagnoses when they’ve ruled a few other problems out (Including IBD in its different forms), and my doctor didn’t rule anything out. No other doctor has questioned that initial diagnosis. But IBS is also affected by different foods, which explains the doctor’s advise: certain foods trigger it, and can be avoided. I don’t get triggered by certain foods. I am always sick to my stomach. It’s not nausea, it’s pain.

Have you seen Amazing Grace? You should if you haven’t. It’s great. Not just a little, it’s really… amazing. Seriously. But don’t expect a light hearted movie, it’s not. I first started to question my diagnosis when I watched Amazing Grace. You see, the movie is about William Wilberforce, one of the world’s lesser known heroes. HE suffered from colitis. Ioan Gruffudd’s acting is so convincing that I… how do I word it? I didn’t empathize with the character… I… knew. That may not make any sense, but I his acting was so effective that I began to wonder what the modern diagnosis would have been for William, surely colitis is one of those old timey diseases that we have a much better understanding for now, right? Actually, no. Colitis is one of the forms of IBD (Inflammatory Bowel Disease). At the risk of self diagnosis, it fits my symptoms much better than IBS. There are some tests to be taken, and I haven’t yet had those tests, but *crossing fingers* here’s hoping for a more accurate diagnosis: you see, colitis, while MUCH worse than IBS, can be treated because it is actually a disease. It doesn’t really go away (short of removing major body parts) but it can be treated. I like treatment better than pain.

The Tickling Sheets and the Boy Who Didn’t Sleep

One of my first memories of sleep was that I hated sheets. Especially thatdarn top sheet. It… tickled. No, that’s not right, but it was the closest I could come up with in my young age to describe the sensation. All night I’d kick and wiggle. It had to be the sheets that where tickling my legs. The darn flannel sheets where so hot that I wanted to cry, and the lighter the sheet got the more it… tickled. But tickling is generally a pleasant experience. Not from my sheets. Those hurt. And the lighter the fabric, the softer the touch on my skin, the more uncomfortable it became, even to the point of being painful. I described this as a child to my mother as tickling, and I remember being so frustrated that she didn’t understand that it wasn’t a good thing. I didn’t have the language to communicate what was wrong, but I persisted to refuse a top sheet even into my late teens. I don’t think I really used one until I was in my early twenties and I had a wife who wanted one. But I didn’t begin to understand WHY until I was a missionary.

One of my companions had a doctor’s appointment. Dutifully, I waited in the waiting room while he got his medical treatment. We missionaries where supposed to avoid television, so I sat sneaking occasional glances at whatever daytime show was playing in the lobby. I remember once finding myself entranced by a commercial: “do your legs itch? Every time you try to relax, does it feel like you’re legs are ready to run a marathon? Does this make it hard to sleep?” “Yes!” I remember almost audibly saying to the television in the crowded lobby, “Yes, that describes it perfectly!” “then you may have restless leg syndrome…” “Oh…. that explains so much of it!” I finally had a name to apply to what was going on with my legs! Restless Leg Syndrome, or RLS is… bad. I am convinced that the punishment in the lowest circle of hell is RSL. I wish I was exaggerating. I didn’t sleep well, even as a young child because of the nightmare.

Yesterday I was introduced to a term called allodynia… that with the RLS really does explain what I described as tickling sheets from my youngest years, but even now I don’t know how to describe it to someone who doesn’t experience similar misery, so generally I don’t.